NDT Advance Access published August 12, 2015 Nephrol Dial Transplant (2015) 0: 1–8 doi: 10.1093/ndt/gfv284
NDT Perspectives Nephrologists’ perceptions regarding dialysis withdrawal and palliative care in Europe: lessons from a European Renal Best Practice survey Barbara C. van Munster6,7, Kitty J. Jager3 and Sabine N. van der Veer8,9 1
Renal Division, Ghent University Hospital, Ghent, Belgium, 2European Renal Best Practice (ERBP) Methods Support Team, Ghent University
Hospital, Ghent, Belgium, 3ERA-EDTA Registry, Department of Medical Informatics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands, 4Imperial College Renal and Transplant Centre, Hammersmith Hospital, London, UK, 5Département de Réhabilitation et Gériatrie, Hôpitaux Universitaires de Genève-Suisse, Geneva, Switzerland, 6Department of Internal Medicine, Academic Medical Center, Amsterdam, The Netherlands, 7Department of Geriatric Medicine, Gelre Hospitals, Apeldoorn, The Netherlands, 8European Renal Best Practice (ERBP) Methods Support Team, University Hospital Ghent, Ghent, Belgium and 9Health e-Research Centre, Institute of Population Health, University of Manchester, Manchester, UK
Correspondence and offprint request to: Wim van Biesen; E-mail:
[email protected] *Both authors equally contributed to the manuscript.
A B S T R AC T Background. There is a variation in dialysis withdrawal rates, but reasons for this variation across European countries are largely unknown. We therefore surveyed nephrologists’ perceptions of factors concerning dialysis withdrawal and palliative care and explored relationships between these perceptions and reports of whether withdrawal actually occurred in practice. Methods. We developed a 33-item electronic survey, disseminated via an email blast to all European Renal Association– European Dialysis and Transplant Association (ERA-EDTA) members. In our data analyses, we distinguished those respondents who reported occurrence from those reporting no dialysis withdrawal in their unit. With multilevel logistic regression, we investigated the association between respondents’ characteristics and perceptions and whether they reported occurrence of dialysis withdrawal or not. Results. Five hundred and twenty-eight nephrologists from 45 countries completed the questionnaire; 42% reported occurrence of withdrawal in their unit in the past year, and 56% perceived that stopping life-prolonging treatment in terminally ill patients was allowed. Few respondents reported presence in their unit of protocols on withdrawal decision making (7%) or © The Author 2015. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
palliative care (10%) or the common involvement of a geriatrician in withdrawal decisions (10%). The majority stated that palliative care had not been part of their core curriculum (74%) and that they had not recently attended continuous medical education sessions on this topic (73%). Respondents from Eastern and Southern Europe had a 42 and 40% lower probability, respectively, of reporting withdrawal compared with those from North European countries. Working in a public centre [odds ratio (OR), 2.41; 95% confidence interval (CI), 1.36–4.25] and respondents’ perception that stopping life-prolonging treatment in terminally ill patients was allowed (OR, 1.96; 95% CI, 1.23–3.12), that withdrawal decisions were commonly shared between doctor and patient (OR, 1.97; 95% CI, 1.26–3.08) and that palliative care was reimbursed (OR, 1.81; 95% CI, 1.16–2.83) increased the odds of reporting occurrence of withdrawal. Conclusion. Reports of dialysis withdrawal occurrence varied between European countries. Occurrence reports were more likely if respondents worked in a public centre, if stopping lifeprolonging treatments was perceived as allowed, if withdrawal decisions were considered shared between doctors and patients and if reimbursement of palliative care was believed to be in place. There is room for improvement regarding protocols on withdrawal and palliative care processes and regarding nephrologists’ training and education on end-of-life care. 1
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Wim van Biesen1,2,*, Moniek W.M. van de Luijtgaarden3,*, Edwina A. Brown4, Jean-Pierre Michel5,
Keywords: dialysis, withdrawal, end of life care, palliative care, conservative care, chronic kidney disease
There is an ongoing debate and increasing room for doubt about the benefits of starting or continuing dialysis in many groups of patients. For the frail elderly, the most rapidly growing subgroup of patients starting renal replacement therapy (RRT), there is often an accelerated decrease in the quality of life and independence after initiation of dialysis [1]. One in five patients on dialysis are depressed, and one-third have different degrees of cognitive impairment [2]. Furthermore, it remains unclear whether RRT prolongs life in this elderly patient population [2]. Results from a Canadian survey showed that nearly two out of three patients declared they regretted having started RRT [3]. Over the last decade, the incidence of withdrawals has been increasing [4, 5], as has the interest for issues related to withdrawal decisions. Reports on incidence of dialysis withdrawal show considerable variation between centres [6]. This variation may partly stem from differences in patient case mix [5, 7], definitions of withdrawal or palliative care [8–10], attitudes of clinicians and patients to end-of-life care planning and choosing not to have dialysis (conservative care) [6, 11, 12], training and education of nephrologists and patients on end-of-life care [13] or differences in how palliative care is organized [9, 10]. Furthermore, from an international perspective, withdrawal of dialysis and end-of-life practices may differ between high and low income countries. Sociocultural and legal–ethical factors also play a role in the management of patients after withdrawal from RRT [10]. The reasons for variation in withdrawal rates across Europe are currently poorly understood. The European Renal Best Practice (ERBP) group has therefore undertaken a survey in an international sample of nephrologists on their perceptions of factors concerning dialysis withdrawal and to explore the relationship between these perceptions and reports of whether withdrawal occurred in their practice.
METHODS We developed a 33-item English electronic survey in SurveyMonkey® (Supplementary Data 1) to explore nephrologists’ perceptions on withdrawal of haemodialysis and palliative care after withdrawal. Within the survey, withdrawal was defined as ‘the deliberate cessation of dialysis treatment even though dialysis is technically still possible’ [8] and palliative care as ‘the care provided to patients with end-stage renal disease after dialysis has been withdrawn’. It concerns the ‘set of treatments that aim to maximize the comfort and quality of life of these patients during the last stages of their life, even if this would hasten death’. Survey items were derived by two authors (M.W.M.v.d.L. and S.N.v.d.V.) from guidelines and review articles on palliative care and dialysis withdrawal [14–18], and referred to the perception of the respondent on legal–ethical issues around end-of-life care, the decision-making process and patient views around dialysis
2
Data collection and analysis We disseminated the questionnaire via an email blast to all members of the European Renal Association–European Dialysis and Transplant Association (ERA-EDTA) and sent reminders after 3 and 6 weeks. We collected data with SurveyMonkey® in October and November 2013. Lambie et al. [6] used a 1% cut-off to distinguish clinicians who have an open attitude towards withdrawal from those who are more aversive. Accordingly, we classified those who estimated the percentage of withdrawals in haemodialysis patients under their direct care to be 50 haemodialysis patients under their direct care (57%). Of all respondents, 220 (42%) reported occurrence of withdrawal in the past 12 months. Table 1 presents respondents’ characteristics and perceptions, distinguishing those reporting occurrence of withdrawal from those who reported no withdrawals. Laws and regulations Overall, 295 (56%) respondents perceived that stopping life-prolonging treatment in terminally ill patients was formally or informally allowed in their country, and 172 (33%) reported to be aware of an explicit law or official regulation regarding the right for palliative care.
Table 2 shows that there was considerable variation between countries in the percentage of respondents reporting withdrawal occurrence. Countries with a high percentage of respondents reporting occurrence of withdrawal had a higher percentage of reporting that stopping life-prolonging treatment was allowed (Figure 1) and that there was a national law or regulation available (Figure 2A). At the regional level, almost half of respondents from countries in Northern and Western Europe reported the availability of a law or regulation on palliative care, while this was 25 and 24% in Southern and Eastern Europe, respectively (Figure 2B). Our univariate country-level linear regression analysis showed that—compared with countries in Northern Europe—the probability of reporting occurrence of withdrawal in Southern and Eastern Europe was 42 and 40% lower, respectively (P < 0.01), but was similar in countries in Western Europe (4% lower; P = 0.71).
No withdrawals (n = 308)
149 (68)
187 (61)
21 (10) 29 (13) 76 (35) 94(43)
26 (8) 45 (15) 86 (28) 151 (49)
54 (25) 42 (19) 124 (56) 181 (82)
74 (24) 56 (18) 178 (58) 218 (71)
159 (72)
136 (44)
71 (32) 26 (12) 91 (41) 32 (15)
52 (17) 23 (8) 154 (50) 79 (26)
23 (10) 31 (15)
14 (5) 20 (6)
36 (16) 15 (7) 169 (77) 102 (46)
44 (14) 86 (28) 170 (55) 124 (40)
34 (15)
21 (7)
99 (45) 86 (39) 35 (16) 153 (70)
128 (42) 108 (35) 72 (23) 152 (49)
129 (59) 43 (20) 79 (36)
123 (40) 24 (8) 62 (20)
NDT PERSPECTIVES
Characteristics Male gender Years of clinical experience 20 Number of HD patients under respondent’s direct care 50 Working in a public centre Perceptions Laws and regulations Stopping life-prolonging treatment is allowedb Regulation of the right for palliative care Explicit law No explicit law, but official regulation No official regulation, but permissive attitude None of the above Withdrawal decision-making process Presence of local protocol on withdrawal decision making Geriatrician consulted in ≥25% of withdrawal decisions Who makes the decision Doctor alone Patient/family alone Shared decision between doctor and patient/family Would withdraw even if patient’s decision is not supported by family Organization of palliative care after withdrawal Presence of local protocol on organization of palliative care Palliative care organizations Government or private for-profit organizations Private not-for-profit organizations and volunteers Not organized or do not know Palliative care is fully or partly reimbursed Palliative care training and education Presence of dedicated specialist training on palliative care Palliative care as explicit topic within nephrology curriculum Attending CME sessions on palliative care in last 3 years
Occurrence of withdrawals (n = 220)
Values are numbers (%). CME, continuous medical education; HD, haemodialysis. a Those who estimated the percentage of withdrawals in haemodialysis patients under their direct care to be
